Chapter 6

Chapter 6

The use of restraints in dementia care

A restraint free environment means no words, devices or
actions will interfere with a resident's ability to make a decision or restrict
their free movement...The use of restraint confronts a resident's rights and
dignity and, in some cases, may subject the resident to an increased risk of
physical harm. – Decision-making tool: supporting a restraint free
environment in residential aged care, published by the Department of Health
and Ageing [(Department)][1]

I am increasingly concerned about the use of restraint in
aged-care facilities as a means of responding to behaviours of concern. The use
of restraint is a significant infringement on human rights and the lawful
authority for the use of restraint in aged-care settings is ambiguous at best.

6.1
A key issue throughout this inquiry was the use of restraints in the management
of dementia and Behavioural and Psychological Symptoms of Dementia (BPSD).
Restraints can be divided into two categories: physical and chemical. Physical
restraints include locked facilities[3],
the removal of mobility aids such as scooters[4],
binding patients to furniture[5],
and preventing patients from socialising with certain people.[6]
Chemical restraints are typically medications that act to calm residents or prevent
certain behaviours.[7]
This chapter discusses the reasons and appropriateness of the use of restraints
and monitoring and conditions placed on their use. The chapter concludes with
the discussion of whether restraints are necessary in caring for people with
dementia.

The rights of patients and considerations in using restraints

6.2
The committee heard that one of the impacts of a diagnosis of dementia in
a residential aged care facility (RACF) was a seemingly automatic erosion of
personal rights:

It is quite surprising and disappointing to see the number of
staff members we train who do not understand that the people who live in the
homes have rights. To me, what is lacking is a general rights based approach.
That just not seem[s] to exist at all, and people do not understand that. They
think, 'Well, they get to a certain age; they have a form of dementia, and that
means we have to make decisions for them and don't have to take into
consideration what they want.[8]

6.3
Extrapolating from the Universal Declaration of Human Rights, the
United Nations Principles for Older Persons encourages governments to
incorporate certain principles into their national programmes whenever possible,
including:

Older persons should be able to utilise appropriate levels of
institutional care providing protection, rehabilitation and social and mental
stimulation in a humane and secure environment.[9]

6.4
In its submission to this inquiry, the Australian Medical Association (AMA)
provided guidance on how and why restraints are used in an aged-care setting:

The need for physical or medical restraint is based on the
medical practitioner's assessment of the issues. The medical practitioner has
to determine the right balance between:

A patient's right to self-determination;

The need to protect the patient from harm; and

The possibility of harm to others.

The decision to use restraint is not made in isolation. It
involves a process of: request; assessment; team involvement; and consent
within an ethical and legal framework.[10]

6.5
Some people derive great benefits from medication and need it to enable management
of their condition.[11]
The Royal Australian and New Zealand College of Psychiatrists (RANZCP) noted
that 'the appropriate use of psychotropic medications is an essential
element in improving the quality of life for some older people with mental
illness'.[12]
One of the experiences related to the committee highlights the positive impact
appropriately used psychotropic medication can have on a sufferer of dementia:

I know everybody has been talking about how bad the drugs
have been, but mum was only ever on one drug: Aricept. It really helped her a
lot for the first nine months. We kept it up because we did not know how bad
she would be without it, and it did help her. Before she was diagnosed she was
all tearful and stopped doing her artwork, but after two weeks on Aricept she
was back to painting again. It lasted for about nine months, and then the
disease progressed.[13]

6.6
Alzheimer's Australia, a staunch advocate for those people living with
dementia, also recognised that 'from time to time there are emergencies and we
do accept that these drugs have a role'.[14]
The committee similarly heard that while it was important to prevent the
inappropriate use of medication, it was important that those who did need
medication still received it. As Professor Draper noted:

[Whatever] consideration we give to how we in some way try to
minimise the inappropriate use of these drugs, we need to also make sure we do
not capture in that people who are appropriately being treated for serious
mental disorders like schizophrenia or serious mood disorders like depression,
manic depressive disorders, bipolar disorders.[15]

6.7
Unfortunately, the committee also heard allegations that restraints were
used for the convenience and protection of the facility, rather than the
clinical needs of the patient.[16]

Chemical Restraints

6.8
The evidence received by the committee points to a troubling trend in
which there is an increased use of restraints as a management tool for BPSD,
often used in the absence of guidelines about their appropriate use and
management.[17]
The committee heard that:

...anecdotally we are
getting and seeing increasing reports of the use of restraints, particularly
chemical restraints in aged-care settings. That is and of itself, particularly
the use of antipsychotic medications, is of particular concern to me.[18]

6.9
Alzheimer's Australia estimated that only one-in-five dementia sufferers
currently on antipsychotics currently need to be on them.[19]
One nurse contended however that:

Chemical restraints I believe are only prescribed by a doctor
and given when all else has failed in managing the person's behaviour, for
their safety. It is not just given out because it can [be].[20]

6.10
The committee heard that the over prescription of antipsychotic
medication can present more risks to the health of a person than the behaviour
that the medication was introduced to control.[21]
As one witness related:

She was a risk of falls, because of the over-medication; she
was drowsy and really unable to do any of the personal care and so forth, so
required a lot more support from us...Sometimes medication that is
over-prescribed can have a huge detrimental effect on the person and create
more concerns for that person than they would if they had the behaviour.[22]

6.11
Morbidities that may come with these medications include cardiac deaths,
strokes, falls and other injuries.[23]
The committee also heard of cases where patients were given combinations of
medication to control behaviours resulting in hospitalisations as a consequence
of adverse reactions to those medications.[24]

6.12
HammondCare emphasised that there remains a grey area between the risks
posed by restraints and the risks posed by a patient's behaviours:

One of the things HammondCare is passionate about is
balancing people's knowledge about the risk of restraint versus what risk a
person may pose to themselves or others without restraint. I think the grey
area there has to be acknowledged, and that grey area is only managed with the
right expertise at a medical level.[25]

6.13
The committee received evidence from stakeholders that restraints are
being used too readily in aged-care to cover staff and resourcing constraints.[26]
Some argued that there is an overreliance on medication to manage the behaviour
of residents that could be dealt with without resorting to chemical restraints.[27]
The Australian Psychological Society (APS) argued that there is a
pharmacological 'knee-jerk response' to many conditions associated with
dementia—especially BPSD—rather than managing those conditions through
non-medical pathways.[28]
This position was echoed by the Young People in Nursing Homes National Alliance
(YPINH) who stated:

What we have often seen is that the use of drugs becomes a
response of first resort, not last resort, because of escalation of behaviour
or because other residents may be being endangered, or even just because noise
levels are unbearable.[29]

6.14
Elder Rights Advocacy (ERA) argued that General Practitioners (GPs) are
prescribing drugs at the behest of facilities who are insufficiently staffed to
deal with people with dementia:

As staffing pressures appear to mount – that is the message
from the industry – they are using it as a soft restraint, it would seem to me.
It is not that soft but you do not see it and that is the only difference in
it. Mostly GPs are doing it, we believe at the behest of aged care facilities
saying, 'we don't have an option. We can't cope with the person.'[30]

6.15
The AMA seemed to implicitly argue that the use of restraints is often a
reflection of resourcing limitations rather than clinical need, noting:

In the environment of an under resourced residential aged
care facility, with limited qualified nursing staff and sufficient numbers of
carers, the need for restraint is an unfortunate reality.[31]

6.16
The committee heard that the use of restraints in residential care was
often poorly managed with people placed on a restraint long-term, rather than
using restraints as an intervention with start and finishing dates. Alzheimer's
Australia explained to the committee how drugs can be undermanaged:

What tends to happen is that once somebody is on a drug they
tend to stay on it. A lot of these drugs are recommended for regular review and
they are not. Some of the prescribing practices seem to be learnt in hospitals,
so the person comes back from acute care having been restrained by one
antipsychotic or another and it is maintained in the residential care facility
and not questioned.[32]

6.17
HammondCare suggested that:

In my view, an antipsychotic should be viewed in the same way
that an antibiotic is. It should have a start time, a review time and a finish
time. It is treatment for a particular intervention and is not something that
should be used long term.[33]

6.18
The use of mandatory reviews of antipsychotic medication was another
suggestion put to the committee to improve the management of medication. It was
reported that the Australian Geriatric Society recommend that there should be a
revision within three to six months.[34]
The committee heard that:

Three months is what we tend to think is a time frame at
which, if a drug is appropriately prescribed in the first place and seems to be
assisting the situation, it is worth trying to stop the drug. And research
suggests that up to 50 per cent or so can be stopped successfully.[35]

Recommendation 12

6.19
The committee recommends that the use of antipsychotic medication should
be reviewed by the prescribing doctor after the first three months to assess
the ongoing need.

circumstances where an individual has been prescribed
antipsychotic medication for more than six months, together with the reasons for
and any steps taken to minimise that use; and

general usage patterns of antipsychotic medications in each
facility.

6.21
One of the reasons put forward to explain the under-management of
medication was poor links within the care ecosystem. The committee heard that
communication between doctors and different parts of the health system was, at
times, poor, and meant that GPs working in residential facilities did not have
sufficient information to cease a medication. As Professor Pond explains:

There is a gap when, as a new GP, I take over the care of
someone in a nursing home. I often only have some written information about
them and do not have any actual discussion or much detail from their former GP.
[Discharge summaries] are often difficult to interpret for GPs, so we do not
know why someone is on the medication. We really need a better way of gathering
a history and improving that communication between acute and aged care. We as
GPs might be reluctant to cease something when we are not quite sure what it is
and when in a percentage of cases – around 20 per cent, I believe, from the
literature – you will get a resurgence of behaviours if you stop the
medication. That might be very difficult. I have certainly had a patient who
ended up in a specialised unit having had her medication ceased. That is
something that makes you very reluctant to follow that path again.[36]

6.22
The decision to start or cease a drug relies on the 'clinical
professionalism of the doctor's prescribing behaviour and in the monitoring of the
client over time'.[37]
The committee also heard however, that doctors rely heavily on the facility to
advise them on how the patient has reacted to medication, or for a history of
that patient's past behaviour. As was explained to the committee:

[The] GPs often say that they feel powerless to do anything
other than fulfil the nursing staff's requests, because the nursing staff are
at their wits' end about how they can manage a situation that to them is
causing huge problems in their facility, either with some form of aggression or
agitation or other forms of disruption. So it becomes a bit of a chain even, if
you like: there are the nursing staff, and maybe there are not enough of them,
or not enough skills to deal with the problem; they hassle the doctors, and the
doctors cannot think of much else to do, because the doctors themselves may not
have many other skills beyond the prescription pad for this type of problem.
And it continues on that way. Many doctors feel that if they do not prescribe
then the patient will be sent by the facility to an emergency department
because the facility cannot cope. These kinds of pressures happen.[38]

6.23
The committee was informed that GPs will see patients on medication at
least every 12 weeks to write up medication charts.[39]
It is not clear though, how doctors who only intermittently see dementia
patients can accurately make the decision to start or cease a medication.

6.24
The Pharmaceutical Benefits Scheme (PBS) only records the number of
medications dispensed, not necessarily to which patient, which has resulted in
difficulty in monitoring drug use across Australia. It was not clear how many
individuals were receiving treatment as one person may have been on several
drugs concurrently.[40]

6.25
Evidence received from the Department appears to confirm the suspicions
of a number of submitters to this inquiry: that the use of drugs in dementia is
higher than would be expected on clinical grounds alone. The committee heard:

The drug utilisation subcommittee has become concerned about
the use of antipsychotic medication in comparison with the prevalence of
depression or schizophrenia at the population level. They undertook a
comparison at the end of last year and at the beginning of this year. The
reports show that the use of PBS-listed antipsychotics is growing at a higher
than expected rate. It is growing at a higher rate in the elderly...In February
2013 it found that there is a high and inappropriate utilisation of
antipsychotics in the elderly, especially in the case of two drugs: quetiapine
and olanzapine, which are prescribed at a rate inconsistent with the
age-specific prevalence of bipolar disease.[41]

6.26
Dr Towler went on to say:

There is no doubt that some of these medications that we
suspect, because of the data that do not line up here, are being used
inappropriately in terms of their funded indications on the PBS.[42]

6.27
Although the Department's submission argues that:

The Government has in place a range of initiatives to help
ensure that anti-psychotic medicines are used only as a last resort and that
the prescription of anti-psychotic medicines is closely regulated.[43]

6.28
The evidence indicates that more can be done to minimise the use of
drugs in aged care and increase the efficacy of the oversight regime.

6.29
The Australian Institute of Health and Welfare (AIHW) reported to the
committee that the 2014 edition of Australia's Health will provide
greater granularity of dementia drug prescribing practices than has previously
been available.[44]

6.30
Alzheimer's Australia called for the accreditation standards agency to
take a leading role in improving the transparency of prescribing practices
within aged care.[45]

Recommendation 14

6.31
The committee recommends that the Commonwealth develop, in consultation
with dementia advocates and service providers, guidelines for the recording and
reporting on the use of all forms of restraints in residential facilities.

Recommendation 15

6.32
The committee recommends that the Commonwealth collect and report:

the number of residents in aged care and acute care facilities
with a diagnosis of dementia;

the number of these residents who are taking, or have taken,
antipsychotic medication;

the number of instances where a patient has been prescribed
multiple anti-psychotic medications;

the reason the medication was prescribed; and

the average duration of a course of prescribed antipsychotics.

Physical restraints

6.33
It was put to the committee that the use of restraints is often for the
necessary protection of patients:

Many facilities have a locked dementia unit so people cannot
actually get out, where the might be a busy road or something like that. For
the night people may be put in a low bed that is a little bit difficult to get
out of so that they cannot wander easily. It is not actually a restraint as
such but it does provide a physical barrier to wandering. So there are some
things like that that do not feel anything like being tied up but that do
minimise behaviour that might cause that resident some harm.[46]

6.34
The committee received some particularly disturbing evidence from ERA
detailing the use of physical restraints in some facilities:

His daughter contacted us when she went to visit dad –
bearing in mind he is 93 years old – and she found him strapped into a
wheelchair. This is in a psychiatric facility, so one we would expect to have a
high ratio of staff. She was told that they did this to keep him safe, because
he would not settle, and they felt that he was a high falls risk and it would
be best to strap him into the wheelchair. When challenged on this by me they
said, 'No, it's not restraint, because he can still move his feet and pull the
chair along.' This is a psychiatric team who told me this.[47]

6.35
It was further reported that the same facility managed another patient
by locking him into an isolated corridor area.[48]

6.36
As well as overt restraint, the committee heard of a number of
situations that may be deemed a restraint in that they limit a person's rights
to information and association. The committee was informed that residents were
sometime restricted from engaging in sexual relationships at the request of
their families.[49]
The committee heard that there was a need to balance the rights of consenting
adults with dementia to associate with whomever they please, and the wishes of
the family who may find the relationship painful to observe:

Another scenario similar to that which I really want to
highlight and which upsets a lot of people is where you have a person who has
dementia who has forgotten who their living spouse is and forms a relationship
with another person who might have dementia in the residential aged-care home.
This is really, really difficult...What [providers] tend to do is separate the
two.

...

Even if you have dementia, even if this is hurting someone,
you still have a right to choose who you have relationships with. This is a
difficult issue. I sympathise with people who are caught up in that type of
scenario, but the rights are still and there and they will never disappear.[50]

6.37
ERA recommended to the committee that Australia explore 'deprivation of
liberty safeguards' such as those used in the United Kingdom.[51]

Committee view

6.38
While the committee is not in a position to verify the accuracy and
currency of these claims of physical restraint, the committee takes these
claims seriously. The committee believes that this case serves as a cautionary
warning of the harm that can occur where dementia care practices do not focus
on the patient.

Guidelines for the use of restraints

6.39
The Department reported that there are guidelines and advices provided
by the authorities to RACFs:

For some years, staff in aged care homes have had access to a
decision-making guide to help them make decisions about minimising the use of
physical and chemical restraint in the care of older people with dementia.[52]

6.40
The official guidelines were updated and in 2012 two new decision-making
tools were reportedly provided to all residential and community care services: Responding
to Issues of Restraint in Aged Care in residential care and Responding
to Issues of Restraint in Aged Care in community care (Guidelines).[53]
The Guidelines replaced and updated the previous guidelines published in 2004. As
the Department explains:

[The guidelines] emphasise that: a restraint-free environment
is a basic human right for all care recipients and chemical restraint should
not be implemented unless alternatives are explored; and a review of the use of
chemical restraint should be carried out in consultation with the care
recipient's medical practitioner and an accredited pharmacist.[54]

6.41
In addition, the National Prescribing Service has produced over ten
publications on the management of behavioural problems related to dementia that
include guidance on minimising the use of drugs, as well as conducted outreach
education programs.[55]

6.42
A diversity of opinions was put to the committee regarding the current
guidelines. One service provider 'strongly [recommended] more robust guidelines
be written to prevent long-term use of antipsychotic medications'.[56]
This view was not universal. Another provider posited that 'there are very good
and solid guidelines', but these need to be properly implemented.[57]
This position was echoed by Benetas which argued that the Guidelines 'provide
an excellent model but again the problem is to have health professionals attend
aged care facilities to undertake medication reviews.'[58]

6.43
Despite the availability of guidelines and official guidance on the use
of restraints, different providers were reported to still have differing ideas
of what constitutes a restraint:

I would even go so far as to say that I believe that there
are differences in the definitions that different providers are using of what
constitutes a restraint. In my travels over the years I have heard people
saying, 'Oh, well, if you have got a person who has a diagnosis of dementia,
you do not have to class it as a chemical restraint because the person has an
antipsychotic.' That is where it starts to get problematic.[59]

6.44
This confusion should not exist. The Guidelines are clear regarding what
constitutes a restraint and under what circumstances they may be used, and
emphasises that restraints 'must not be implemented until alternatives are
explored extensively through assessment'.[60]
The committee, unsurprisingly, heard calls for greater publicity and training
to be provided around the Guidelines and other advices.[61]

Committee view

6.45
The adequacy of the existing Guidelines is obviously a concern based on
the evidence presented above. The committee was surprised that many people
appear to be unaware that Guidelines exist, let alone what they contain. The Guidelines
appear to be of a high quality and recommend various alternatives to the use of
restraints. The committee notes however that there do not appear to be any
penalties for the over use of medication, or incentives for providers to
minimise the use of restraints.

6.46
Unfortunately the lack of granularity in the data limits the scope of
these considerations. In the first instance, the committee considers it
important that the use of medication that could be considered as a restraint is
quantified and reported to enable a clearer picture of how restraints are being
used.

6.47
The committee recognises that the government has produced a number of
guides and advices, in addition to the Guidelines, regarding the use of
restraints in managing dementia and other conditions. This information however
does not seem to have percolated through the sector, especially to doctors who
are responsible for prescribing and managing these drugs.

Recommendation 16

6.48
The committee recommends that the Commonwealth undertake an information
program for doctors and residential aged care facilities regarding the
guidelines Responding to Issues of Restraint in Aged Care in Residential
Care.

Are restraints necessary?

6.49
A number of contributors argued that when the time was taken to
understand the causes of BPSD the use restraints was typically unnecessary:

I think that knowing
the person, working with them and understanding them is a much more effective
way to go. Communicating with them and understanding what their behaviours are
about is a much more effective way to go than using chemicals restraint.[62]

6.50
Alzheimer's Australia emphasised that when the causes, rather than just
the behaviours, were considered it was easier to understand why the person is
acting the way they do:

I think the secret to dementia care is actually very simple,
and that is to look at the cause of a person's symptoms and not to respond to
the symptoms themselves. If somebody is violent, they are not being violent
because they are a nasty person. They are being violent because they are
frustrated. They feel no purpose in life...They do not know where they are. They
feel disorientated. They may feel very depressed. They may be suffering
psychosis. They may be losing their words. They may not be able to communicate.
You put all those things together and think of how you would react and then you
can start to translate it into your own behaviours.[63]

6.51
A person's behaviour may also be as a result of their own personal
history. Demonstrating the importance of understanding a person's background is
well demonstrated in the following example:

I have a patient who is looking at nursing home care, and I
know she was in Europe during World War II and was bombed, and she gets very
upset when there is a low-flying aircraft and will probably exhibit behaviours
in the nursing home that might be very difficult for people to understand
unless they know that particular issue.[64]

6.52
The Brotherhood of St Laurence argued that with a sufficient
understanding of the patient, most antipsychotic medications were unnecessary:

We very rarely have a need to use antipsychotic medication.
There may be a use of anxiety-reducing medication, but generally that might be
undertaken for a short period where you are getting the anxiety brought under
control but you are looking at all those other things that we have just been
speaking about, which was understanding the person.[65]

6.53
Wintringham reported great success in transitioning patients off
medication when the time was taken to understand the root cause of their
behaviours.[66]
Similarly, HammondCare reported that their dementia-specific facility 'with
appropriate design principles and specially trained staff' has successfully
implemented a no-restraint policy.[67]
Rural Northwest Health reported large reductions in the number of patients on
medication following their conversion to the Montessori method of care.[68]

6.54
Speaking from a medical perspective, Professor Pond agreed that there
was scope for reducing the reliance on medication through additional staff
training and resources:

I think it would be
so much better if the nursing home staff had the training and resources to
provide some simple distracting activities [for residents]. Some nursing homes
are excellent at this, but all too often residents are left to their own
devices for huge swags of the day and then they turn to pacing and rattling doors
and wanting to go home, and calling out.[69]

6.55
This view was echoed by Professor Brian Draper:

I think there is
clearly an overuse of drugs, and I think a lot of this relates to poor design
of facilities and training of staff, inadequate numbers of staff and lack of
suitable activity programs. I think that if a lot of that could be improved
then the use of medications would be much less.[70]

6.56
Based on this evidence, it appears that the use of restraints can be
significantly reduced from their current levels. Providing personalised care;
ensuring staff members have the appropriate training; and that facilities are
designed and managed with the needs of dementia in mind appear to be three of
the foundations to build a better care model upon.

6.57
The RANZCP provides an important caveat to this viewpoint:

A recent systematic review into the ability to implement non
pharmacological management of BPSD within residential aged care concluded that
there are several non-pharmacological interventions that may be effective, but most
interventions required significant resources from services outside of long term
care or significant time commitments from long term care nursing staff for
implementation.[71]
(emphasis in original)

6.58
It is possible to significantly reduce reliance on restraints provided
that the resources in the form of training, time and facilities are available:

For the desirable goal of reduced use of restraint and
pharmacological interventions in people with BPSD to be achieved, increased
access to trained staff with adequate time and resources within residential
aged care facilities will be required.[72]

Committee view

6.59
The evidence provided by the Department of Health and Ageing seems to
confirm that there is significant overuse of psychotic medication in aged care
to control BPSD. This overuse must not be allowed to continue. The existence of
several providers who manage BPSD without reliance on chemical or physical
restraints highlights what can be achieved with the current resources
available.

6.60
This chapter, and those preceding it, have shown that aged care
professions know how to reduce the impacts of BPSD. Chapters three and four
highlighted the importance of appropriate facilities and environments and a
person-centred focus in reducing unnecessary BPSD. Chapter five discussed the
importance of adequate staff training in managing BPSD. This chapter brings
together these tools—education, appropriate facilities, adequate staff numbers,
partnerships with carers, and a person-centred focus—to demonstrate that some
service providers are already managing dementia and BPSD without resorting to
restraints unnecessarily.

6.61
The use of medication is a symptom of the aged care system not placing
enough emphasis on staff training and providing a person-centred focus that
engages the patient in meaningful activities. Reliance on restraints to manage
dementia and BPSD is not an acceptable model of care, especially as more and
more Australians are diagnosed with dementia. It is necessary to make the
necessary investments in training and facilities to ensure that the rights of
people with dementia are respected and they are free from unnecessary
restraints.

6.62
The Commonwealth has recently made significant changes to the aged care
system under the Living Longer, Living Better reforms. It is hoped that
some of these reforms, such as the Dementia and Cognition Supplement, will
improve the quality of life for people living with dementia. If the ratio of
dementia patients on antipsychotics does not decrease, there will be a need for
further government involvement.